Tuesday, April 14, 2009

Goodbye Copaxone....Hello Rebif

I am not scared of needles; matter of fact, when I get blood drawn I feel more comfortable watching the whole process. Sounds weird, I know. I am not some needlephile, other than B-12 and MS treatments, I had never injected anything.

Perhaps if I had not started off with Copaxone, I might have different views on MS injection treatments. First off, Copaxone did not help to stop my relapses. This recently severe relapse showed 7 new spots on the brain, one large one enhanced, and one smaller one not enhancing. Previously there were only 1 maybe 2 possibly once active sites. The cervical area showed no signs of improvement but there were no new significant signs of growth.

I have quite a few spots on the cervical
and a large bulge, thus all the chiropractic care and massage therapy. I have the numbness that travels down my arms and legs and nerve pain that can be so intense its crippling. Ontop of all of this now is this feeling like I am sunburned where I'm hot on the outside and sweating and cold on the inside. Plus my feet are on fire sometimes. Whenever I bend my neck there are electrical pulses that run up and down my whole body for a few minutes afterwards.

It is most likely the spots on my brain that are causing my eye problems. Not only am I highly sensitive to the light but I also have random fields of light that flash through my vision. To describe my vision, think of a wet dirty screen on a bright and sunny day. Everything is blurred, things are doubled, some parts are dimmed, and other parts seem like there is light shining through.

I have a pretty high tolerance to pain. Matter of fact, I have learned to adjust my pain scale to those of others. My Copaxone injections were becoming increasingly painful. My nerve pain caused each injection to feel like lightning bolts pulsing through my skin as the fluid spread. My body was marked with welts, discoloration, and missing pockets of skin.

I scheduled my life around these injections? I dedicated my life to making sure I took my shots everyday. Many times I didn't go out with friends because I wouldn't be home in time for my daily dose of Copaxone. I'm self conscious by the marks it left on my arms and legs, not quite sure if my skin will ever return to normal.

I did all this for this severe relapse that has taken a good portion of my vision? This was worth more permanent numbness and increased instability while walking? Yeah....sure. Me crying at night because my nerves were on fire from the relapse...Wasn't this drug was suppossed to reduce any flair ups and perhaps promote the healthier areas on the sites of demyelination?

Heck NO! None of that was worth it. If my recent visit to my NEW neurologist hadn't convinced me that things are only going to get worse until we get the damage from this relapse under control. By not taking something to help, like an Interferon, he was worried that more of my motor skills would diminish.

My walking is not great...I walk like I am beyond drunk, bouncing off walks like bowling balls off of buddy bumpers. I know I should be using my cane more often. But I'm not ready for that yet. I'll suffer through swollen knees and increased fatigue. Besides I have to decorate the cane to make it much more publically appropriate. The medical grey and weathered aluminum do not fit into the color codings of my life just yet.

After a series of in office tests the doctor was concerned about my overall loss of function on my right side. I happen to hide it very well, compensating with using my left side more often. He was very adamit about getting me on some form of interferon therapy to keep what motor skills I had and prevent any from getting worse. We talked about many options and we both agreed on Rebif.

I will keep everyone posted on what I think of the whole Rebif thing. I know that there are a lot more things that I have to say about my personal experience with Copaxone. For some people it works for me it did not. I just wish that doctors would listen to my symptoms and not have to wait until an MRI proved that I was right that things were off with certain functions of my body. Wish me luck on Rebif and stay tuned......